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So, What Do You Do?

So, What Do You Do?

“So, what do you do?” Probably the most common question you get when you first meet someone right? Well, it’s one I dread. In the past, I thought nothing of this small talk type question, I even couldn’t wait to answer it, but after two years on disability (or is it three? Damn cog fog!) I get increasingly worried about being asked it. For me, my education and career were a massive part of who I was, they defined me. Now that I can no longer work, I struggle understanding who I am. The added problem with this common question is that when I am normally asked, I’m sure I look perfectly fine.

Not being able to work

Being on disability sucks, there isn’t a nicely worded way to say it. For as much as people may hate working, imagine life without it? I’m not even talking about the money issues (of which there obviously are several). Working most of your life and then suddenly being told you can’t anymore is devastating, at least it was to me. I came from a family that emphasized working hard for what you want. I grew up, went to school, and then had a pretty successful career as a software engineer. I loved what I did and my career was who I was until about 13 years into my diagnosis, then I stopped recovering as well from a relapse. Issues from old relapses were now common and much more at the forefront than ever before.  I knew I couldn’t work anymore, but I just couldn’t admit it, not to anyone, especially not to myself. Then it became out of my control. Being forced on to disability has had a huge effect on me and drives a lot of my depression. Even after all this time has passed, I still have a hard time accepting it.  With this being the source of so much internal struggle that I have, it’s probably easy to understand how much I worry about the question.

But I look so good, right? Sure, at first glance, when I’m asked this question it would seem impossible that I’m on disability. When I say, well, I have MS and I’m on disability, I see the confused look and immediately think that they are probably wondering how I am scamming the system. I worry that they are probably thinking of their aunt’s best friend’s sister on their mother’s side who they are pretty sure has MS and she’s fine. I worry that they see me and because my symptoms are invisible, they think I’m just fine and should be hard at work every day, just like them. I worry that they see me and think I am just lazy and a freeloader.

I can’t explain it

I can’t answer with a full explanation. I can’t tell them that yes, I look good and able bodied at the moment but I’m struggling to stand (or even to sit upright if we are seated). I can’t tell them about the falls. I can’t mention the searing pain running through my body as I struggle to put on a fake smile. I wouldn’t dream of telling them how I’ve really just been nodding along for much of the conversation because my mind is all over the place and my short term memory is near useless. I can’t explain the effort it takes me just to be here talking to them. And they won’t see the aftermath, the punishment my body will inflict on me over the next few days for daring to be out of bed and being social.

So it’s incredibly awkward, though in real life, probably only to me. I’m sure I think about the issue way too much. After all, it’s usually a “small talk” type of question. For most people anyway. To me, it’s so much more. A reminder of the life that was, the career, the education, the status, the old me. I’ve even lied if I thought my chances of seeing the person again were slim. I’d just state my old career and move on. Recently though, I’ve begun to explain myself and feel a lot better about it. I have MS and I’m on disability. But now I go on to explain that I write about my MS and try to help other people with the disease. If I’ve helped one person, that probably is more impactful and greater than anything I ever did in my career. I’m proud of that. Other than that, I try to take care of myself, my wife, and my dog and do a bunch of other small things to fill up my time. However, the most basic and true of answers to the question “So, what do you do?”, is that I fight multiple sclerosis.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • weezy
    7 months ago

    Devin, thank you for putting into words how I feel. Your articles are very helpful in making me feel like I’m not the only person with ms that feels this way. I hope you are able to keep up with your writing.

  • Devin Garlit moderator author
    7 months ago

    Thanks so much weezy! You are definitely not the only one that feels that way!

  • cllemasters
    1 year ago

    Im going thru this right now. I work in a doctor’s office 2 days/week as front desk registration/check out person. I used to work in this same office as a nurse up until 2011 when i could no longer walk and keep up. I truly want to continue to work as long as possible, but I have had to call off a few times recently due to severe pain and not being able to sit for 8 hours. My boss told me i really need to start thinking about if it’s time for me to stop working. I don’t want to stop working! It’s who I am. What will I do for the rest of my life? I’m only 47. I have a long time to live (I mean I think I do). This article just brings it home for me. Thank you for writing what so many go through.

  • Devin Garlit moderator author
    1 year ago

    Thank you @christylou, it’s a very difficult situation. Figuring out when to stop working is hard. It’s not the end of the world, but it can sure feel like it when you’ve worked most of your life. I’ll be honest, it’s something I still struggle with.

  • Pammie
    2 years ago

    Thank you for sharing your story. It is so hard to deal with all the symptoms of MS and people that do not have this terrible disease just don’t get it. You can tell them how terrible you are feeling, how much pain you are in, how tired you are that your body hurts so bad but you can’t sleep. I too was a career worker and an over achiever. Now I can barely make it thru the day. The depression and the isolation is overwhelming. I would not wish this on my worst enemy.

  • Devin Garlit moderator author
    2 years ago

    Thank you Pammie! Depression and loneliness are huge problems for me too. Anyone who says they don’t want to work, hasn’t experienced what we have. You are not alone. I talk more about that here, because it’s such a huge issue for me: https://multiplesclerosis.net/living-with-ms/its-time-to-get-real-about-depression-and-suicide/

  • 10tricia18
    2 years ago

    I use to volunteer at a no kill cat shelter. Feeding, cleaning, medicating as necessary, and cuddling the caged little critters (everything needs a little love). I was able to work at my own pace and it was/is rewarding to give back.
    Someone asks me what I do I tell them I take care of animals at the shelter. It’s not glamorous but it’s rewarding as it needs to be done anyway.

    Thank you for sharing your story. We all need inspiration.

  • Erin Rush moderator
    2 years ago

    As an animal lover, I have to say that I think what you do is absolutely wonderful. 10tricia18! It is definitely important work. Thank you for sharing! Best, Erin, MultipleSclerosis.net Team Member.

  • Clarissa
    2 years ago

    Devin, thank you for sharing your story. You said you knew you had to stop working but you didn’t want to admit to yourself. I’m just wondering how you knew. Was there something specific that happened that told you this unequivocally? Was it another person who noticed something about your work performance and told you? I ask because I am still working myself, but I am stubborn and worry that I won’t recognize the signs. Any tips on how to evaluate ones personal situation in this regard?

  • Devin Garlit moderator author
    2 years ago

    Thank you Clarissa! For me, I knew my work was getting worse and worse. I knew I began have long periods of the day where I just couldn’t think straight. It wasn’t one specific thing that happened, but rather a lot of things that added up. Sometimes I think I’m having the advantage of hindsight here when I say I knew. When I finally when to my manager, I thought I was just having a relapse. Turns out he and others on my team were concerned for a while and didn’t mention anything. One person even said, that if you look at code I had recently written and compared it to 6 months before, it’s nothing alike. She was right. I was able to skate through for a while on reputation and because I worked on a lot of longer term projects. I was a senior member of the team, so I had a lot of leeway. If I wasn’t in that position, I may have ended up stopping sooner. I’d say, again, in hindsight, it’s easy to say you should know, but when it comes down to it, it’s hard to tell. Go with your gut, I think that if it’s even crossing your mind, that might say something.

  • jennyb
    2 years ago

    I got disability for Psoriatic Arthritis and Menier’s Disease, almost 5 years ago Now I have MS too, and it really hasn’t got much easier over those years. Due to the cog-fog, I feel like I am stupid now, but I used to be smart. I can’t believe I used to run an engineer’s office.

  • Devin Garlit moderator author
    2 years ago

    So sorry to hear jennybrownlee4@hotmail.com! Always remember, it’s not that you are stupid, it’s the disease. You’re still smart, you just can’t always access it. Never think of it as a reflection on you! And remember that you aren’t alone in this!

  • Carole
    2 years ago

    This is exactly what I’m going thru right now. I just did the Neuro psych and memory testing Will get results this coming week. I feel like I flunked big time. I am a NICU nurse (Neonatal Intensive Care) No room for error and “I forgot” It’s getting harder and harder to fake it or laugh it off. This has been my life and career love for 23 years. I am not doing well accepting the fact that maybe I can’t do this anymore. I’m helping out a few days a week in a nursing computer/desk job hoping and praying it will turn in to a full time position so that I can continue to work and not have to go on disability. I’m having write everything down and use cheat sheets but I’m learning the softwear programs slowly but surely. I’m just praying so so hard they’ll not see how I’m struggling. I’m a single mom with tons of bills to pay. I HAVE to work I hate MS! Don’t you? but at the same time I’m very thankful and blessed to still be able to see and walk and function.

  • Devin Garlit moderator author
    2 years ago

    Thank you Carole! So sorry to hear of your situation, you certainly aren’t alone. The neuro psych and memory testing can be so incredibly frustrating!!! I absolutely hate MS! Keep up hope though, remember that sometimes it’s possible to adapt, and find new ways to do things. There is always some hope!

  • MSMomOf5Boys
    2 years ago

    Your story will be a great help to the formerly employed now disabled! My first thought was, “I wish this would have been available when I had to stop working.” I too loved my job, worked hard to get promoted to my position and of course the money/benefits. I fought myself to try to keep working until the MS won. One day I was this important person and the next nothing. No problems to solve or changes to implement, etc and no one to even talk to. Everyone I knew worked and my kids were all in school. With nothing to do except sit there in pain and focus on the extreme silence, I went into a deep depression. At the time, my family just went on living their lives like nothing was wrong and treated me like I did not exist. The depression got so bad I felt like I was going crazy. It took me about 3 years before I learned to how to manage the depression/anxiety and MS. Also my family finally realized what MS was and what the symptoms were doing to me. Now they are my main support team! I pray no one else has to go through the storm to reach the calm. I think by reading your story they will know they are not alone! Thanks

  • Devin Garlit moderator author
    2 years ago

    Thanks so much MSMomOf5Boys, I really appreciate that!

  • KFoote
    2 years ago

    Thank you for this article. I needed it! I was a legal assistant for 34 years. Needless to say, it was a very demanding, stressful, fast paced job. I was diagnosed in 2008.
    Cognitive disabilities have been my evil sidekick ever since. At the end of December, I left my job that I loved and gave my heart and soul to. I have filed for SSD and am waiting on a Decision. I have gone through so many emotions over the past few months. People are all the time asking me how I’m enjoying my retirement. I just look at them in wonder. How can I consider this a retirement? I didn’t want to leave my job. I guess I really can understand most people, though. I really did look “fine” most of the time. In fact, while I was and am kicking the ass out of MS, I am looking MIGHTY FINE!!!!!

  • Devin Garlit moderator author
    2 years ago

    Thank you KFoote! I hate when people consider it retirement. Not working because of illness is awful! Cognitive issues have been an issue for me too, in fact, I have an article about that coming out soon. Thank so much for reading and sharing your story!

  • Sandy Richardson
    2 years ago

    Thank you for this article. I relate completely and am so glad i am not the only one feeling this way. I was a flight nurse and have now been on disability for 15 years. My situation is further complicated by the fact that I did not technically have MS until my MRI last month. I had all the symptoms, but no changes on my MRI. So not only did I have to explain disability, but also that “I have symptoms of MS, but no diagnosis”. Then you get the looks…she is faking it. Very frustrating.

    I am praying that when I go to the MS specialist next month, I will be able to try some treatment. So far I have had family doctors who treat symptoms, sometimes works, but does not change the deterioration. Next time someone asks I am going to use your “I fight MS”. Thanks

  • Devin Garlit moderator author
    2 years ago

    Thank you Sandy! MRIs certainly don’t show everything. The standard MRI machine that we often use doesn’t pick up everything that a Research MRI does. But regardless, getting a diagnosis can be difficult for many people, even those with visible results on an MRI. I hope that your MS specialist will be helpful and maybe even get you on a disease modifying drug! I understand what you’ve been though, even with an official diagnosis, the invisibility of many of our symptoms often leads to people not believing us! Thanks so much for reading and sharing you’re experience!

  • messeeone
    2 years ago

    Thanks for this, Devin. After 23 yrs, I still don’t know how to respond. “I’m a retired counselor”? I was 32 when I became disabled – that didn’t see appropriate. “I’m a former counselor”? I put years, $, and lots of hard work into getting a Masters and License– those skills don’t just go away. Believe it or not, it’s actually gotten harder as the years go on. At first, I was almost relieved to be home taking care of two young boys. Exhausted, but grateful for disability compensation. But as those boys have grown, who am I now? What do I do with those (few) hours of the day I might feel goof? I like your answer, ” I fight MS.” I think I’ll try that!

  • Devin Garlit moderator author
    2 years ago

    Thank you bandmom! Even though I’ve been at this disability thing for close to three years, I still struggle with this. Being more open about how MS affects my life has certainly made it a little easier though. We really are fighting our disease more than people realize. Thanks so much for reading and sharing your thoughts, it’s very much appreciated!

  • messeeone
    2 years ago

    I meant feel “good,” tho sometimes I feel like a “goof!”

  • jennyb
    2 years ago

    I hear, “but what did you used to do?” when I say I’m on disability. Most people are very simpathetic.

  • Devin Garlit moderator author
    2 years ago

    Thanks for mentioning that jennybrownlee4@hotmail.com! That’s a pretty good example of how much people identify us by our careers!

  • jennyb
    2 years ago

    I can’t spell anymore, either. Make that sympathetic. hahaha

  • DuluthDan
    2 years ago

    Interesting to see so many folks with MS facing this difficult question. Interesting too how our societies so readily identify who we are, with what we do. That is true for everyone, not just our afflicted club. For 37 years I was a Commercial Banker. Now, I’m retired and am a Singer/Songwriter. Not a very good one, but that’s what I do.

  • Devin Garlit moderator author
    2 years ago

    Thanks DuluthDan, it is very interesting to see just how much people identify us by our careers or former careers.

  • Brian
    2 years ago

    I hate that question. I guess that I am lucky that most people I meet know someone else with MS and understand what it does to you.

  • Devin Garlit moderator author
    2 years ago

    Thank you Brian! That does seem pretty lucky that you know a lot of folks who understand. I think sometimes when someone knows of another with MS and their symptoms aren’t the same of ours, it can cause some bad comparisons. I do think (ok, hope) that awareness is constantly being raised though, so that things like this won’t be an issue for anyone! Thanks for reading and taking the time to comment, it’s always appreciated!

  • chalknpens
    2 years ago

    Good answer. Succinct, to the point, and guaranteed to move the conversation to another topic.

  • Molly R.
    3 years ago

    This is great to hear! I’m currently waiting for my disability hearing so “technically” I’m not disabled yet. I find not only the social small talk hard to answer, but I’ve also come across the question on paperwork. It’s mostly doctors offices, but I have a 3 year old and every time I fill anything out for him they ask the profession or work information with no small check boxes to select disabled.
    Sometimes I put N/A or stay at home mom but it makes me feel horrible because it’s not by choice.
    I’m having the hardest time currently coming to terms with a degree that is now useless (and still owed). This is not what I pictured nor wanted my life to be like. I don’t know how to come to terms with not identifying with my previous career.
    Thank you for writing about this.

  • Devin Garlit moderator author
    3 years ago

    Thank you Molly R. It’s so awkward at times but I hope you can take even just a little comfort in knowing you aren’t alone!

  • DonnaFA moderator
    3 years ago

    Hi Molly, we’re glad that you were touched by this article, and that you’re part of the community. We’ll be sending you all good thoughts in hopes your case is is solved soon. We’re always here to share support. -All Best, Donna (MultipleSclerosis.net team)

  • Annie1
    3 years ago

    Devin, I dread that question whenever I attend a function for my husband’s work. He and they are from the home building industry-driven and independent. I was this way until MS. I was a catering conventions manager for Hyatt Resorts and I’ve raised 3 kids…the last one at home is a high school Senior. I’ve been diagnosed since she was 18 months old. I was always very organized and driven, felt successful and the career was glamorous feeling and fun. I’m not on disability and am not sure if I could be as I’ve now stayed home raising kids for years. However as an intelligent hard working person who put my husband through his masters program so that we could be where we’re at financially, I feel I am treated and looked at as a weak little woman now. It absolutely sucks. And I agree with MJRmsWARRIOR – there are so many other things I like to listen to when I’m talking with someone. Thank you for your articles. I just came back and got deeper into this site today as I lay in bed with no energy at all. ;(

  • Devin Garlit moderator author
    3 years ago

    Thank you Annie1! I certainly understand how you feel! It’s a rough situation but at least we aren’t the only ones dealing with it. Sometimes knowing that makes me feel a tad better! Thanks so much for reading and sharing your story, it is always appreciated!

  • MJRmsWARRIOR
    3 years ago

    I hate that question too. I was pressed about it by an overachiever after she listed all her career accomplishments to me at my husband’s high school reunion, then asked me what do I do. I was so embarrassed by my illnesses (I have MS, fibromyalgia, and several others) that I actually did not answer her and turned away. Needless to say, she appeared astonished by my reaction. Why is the first thing someone asks you when they meet you what do you do for a living, as if they are sizing you up by that? I never ask someone what they do for living when I first meet them, because I am more interested in their character.

  • Devin Garlit moderator author
    3 years ago

    It certainly is a very tough situation. I’ve gotten a lot of feedback on this, so it apparently is a pretty common issue for a lot of us! That doesn’t help much but I do feel a bit better knowing we aren’t alone! Thank you!

  • Lori
    3 years ago

    Devin,
    This story was spot on for me. Thank you so much for sharing. I loved my job too. I was a Process Improvement manager/Strategic Planning Manager. I had to literally grieve the loss of my job. It was a death in my life. The depression from MS was horrible but add the depression of something that has been part of your life for 25+ years of my life. It was/is so hard to deal with especially when your use to giving speeches to large crowds and now you are afraid of speaking to just close friends or your family because of my cognitive issues. I play lots of word games / puzzles and analytic games to keep or feel as if I have some of the old Lori still there. I’m so sorry you’re going through this as well. We just have to give ourselves the best quality of life that we can and keep our sense of humor and learning to have patience when people don’t understand. I’ve always said God gives us a card hand to play with some have a royal flush, some have just an Ace. I probably had a straight flush but am dealing with just an Ace now but that’s okay as long as I live the best quality of life I can, keep my sense of humor, and be patient and kind. Thanks for sharing your story. This one hit the mark. I can’t thank you enough for sharing.
    Lori

  • Devin Garlit moderator author
    3 years ago

    Thanks so much Lori! I hate hearing that anyone else has experienced this, but it is nice to know we aren’t alone. Thanks so much for sharing your story too!

  • Brian
    3 years ago

    When ever someone asks me I tell them I just retired from the military. I did on July !st 2013 and now I am on disability I got diagnosed with MS 6 months before I retired.

  • Juleigh
    3 years ago

    I’m almost out of FMLA. I haven’t been able to work this time since Sept. 20th. I’m figuring I’ll hear from HR any day now. I have 3 docs willing to fill out disability paperwork. My family and friends want me to make ME the priority. This whole situation is rocking my world. I’m quite weak and exhausted and starting the disability paperwork seems overwhelming. I just started my 24th year in education. Can’t imagine not teaching. I’ve been fighting the inevitable for 2 years now. It’s been quite a ride!

  • Azjackie
    3 years ago

    Hi Juleigh! I know it is difficult leaving a longtime career. For me 21 years one profession and like Devin from this article, I was taught to work hard, so total working career for me 31 years. I am 46 and have worked since 13, like many.

    You deserve a break! If you decide to leave teaching, know you deserve caring for yourself.

    I have not only found information from this site I’ve found comfort. Remember to take care of yourself.

  • Devin Garlit moderator author
    3 years ago

    Hi Juleigh, thanks so much for commenting. As I mentioned in the article, I still have trouble accepting it myself, so you are not alone. Always feel free to reach out, it’s much easier to deal with when you talk to someone else who’s been or is going through it!

  • Erin Rush moderator
    3 years ago

    Hi Juleigh! It sounds like you have some supportive family members and friends in your corner. It’s ok to decide you need to focus on your health. If you have doctors willing to fill out disability paper work for you, that is great! While it can be a tough adjustment, taking time off to take care of yourself is a good thing. Please don’t be afraid to reach out to those around you and to communities like this one. There are people here who can really relate to what you are going through! Whatever you decide, know you are not on this journey alone! Thank you for taking the time to comment and for being a part of the MultipleSclerosis.net community. Best, Erin, MultipleSclerosis.net Team Member.

  • Lisa
    3 years ago

    Thanks for this. I went on disability six years ago now. I look just fine and am very lucky. My brain just could no longer do what it needed to do. I am old enough now that I often just reply “I’m retired.” Then people look at me like I must have made lots of money and was lucky enough to retire early. I do facilitate workshops for those of us living with chronic conditions so that is an answer I sometimes give. I still hate the question though.

  • DonnaFA moderator
    3 years ago

    Hi Lisa! We’re glad you’re here and appreciate you joining the conversation. It looks like you have found a way to navigate those annoying questions.0

    Thanks for giving of yourself in facilitating the workshops that provide support to so many in the community. Please know we’re always here to share support or just to listen. -All Best, Donna (MultipleSclerosis.net team)

  • Rudianne
    3 years ago

    This is one of the hardest facts that I have been trying to find a way to deal with. I, too have always identified myself with what I did with my life. I was an RN and my role was to give comfort not get comfort from others. When I had to leave my last job as a Director of Nursing in a Psych ward my world ended as I had always known it. I look normal except for the days I walk as if I have been drinking or I have become increasingly stupid when talking to Doctor’s office staff because I feel they enjoy putting me down. They treat me as a child, calling me honey or sweetheart and this we stuff just drives me insane. There is no we. I feel like next time I hear that I’m going to say, “Right, you pee in the cup this time. I’ll wait for you outside the door”. I wish, just once I could help my world understand that I may look good on the outside but it may have taken me 3 hours to look that good. So if you even noticed that I am not saying much but just sitting there be glad. I’m thereat all because I am probably thinking that I’m give anything to be home in bed. I miss my use to be life and I know that I have a lot still to share inside of me but I get so down and hurt when people no longer will take the time to listen to what I might know. I think we need to educate the public that, yes we do have a chronic illness but we still can contribute to the needs of others the knowledge of what we know. We need to get the word out there between naps and shopping for new walkers, wheelchair’s,canes and scootes. We look just like you.

  • DonnaFA moderator
    3 years ago

    Hi Rudianne, we’re glad that you’re here. Please know that you’re not alone in experiencing this frustration. It’s sometimes hard not to be intimidated when trying to navigate the medical system when you are facing a new diagnosis.

    You may be interested in the the NMSS’s mentor program, it would allow you to use both your medical training as well what yo have learned in your journey.

    Please know that we’re always here to share support and information or just to listen when you need us. -All Best, Donna (MultipleSclerosis.net team)

  • Dimitri
    3 years ago

    Wow. Your story is awfully similar to my own. I was an electrical engineer. I spent a fortune on a good education and then ms strikes. Now sure I’m able to walk most days, but my mind is completely shot. I used to be so proud of my memory, but nowadays I forget and become confused so easily.
    If there is any good in all this it is that ms makes for a great friend filter. The friends that stick by you through the ms journey have been vetted and are truly friends. But along the way I’ve lost several friends too. They just insist that I’m lazy, faking, or just don’t want to work. Because look at me, I look fine right? That hurt so much.

  • Devin Garlit moderator author
    3 years ago

    Dimitri, does sound like you have a similar story to me. After being diagnosed, I though, oh, well, maybe I won’t be able walk but I’ll still be able to do my job. I never expected the kind of memory and cognitive issues that would eventually arise.

    I hear you about it being a friend filter. That is SO true. Ive lost a lot of “friends” too.

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